In September 2013 I was diagnosed with borderline serous tumours after my left and right ovaries both contained tumours, upon surgery, my left ovary was removed and part of my right ovary. They preserved some ovary for fertility saving. Whilst undergoing the op they found a tumour had connected to part of my bowel, and was found in 4 out of 7 lymph nodes that where removed.The tumours where graded at 3a, and noninvasive, and oncologists advised me no chemo or further treatment was needed.
I had my first check last week with my consultant after having an internal scan, and they have found another 'mass' in part of the right ovary that was left. My ca125 is 40, which he says isn't high. But surely this should be lower considering I've had an ovary removed? His advised me it may be a blood clot, but I've never heard of anyone having this and seems more believable that it is recurrence! Has anyone else had such an early stage of recurrence, and if so what was your outcome? (Sorry to waffle on! So anxious!)
Many thanks to all you brave people here xxx
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dollydimps
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Hi! I haven't got any info that will help you but maybe if you ring the Ovacome helpline tomorrow, the nurses there may be able to give you a bit more info. It's 08453710554. There's also some info on fact sheets, under the resources heading on ovacome.org
I hope you can get some support. It's completely understandable, your feeling anxious and confused about what's going on.
What a terrible worry for you. It's not good enough that your consultant has left you feeling unsure and worried. Do you have a good CNS nurse you can contact at the hospital to explain how you feel? I just get the feeling you need to go back and tell them how worried you are and ask how they will be able to check it's just a blood clot and nothing more. The CA125 at 40 is a little above normal but it does fluctuate for a number of reasons so are they going to re-check it for you at a given point?
I read posts here from women who haven't found their consultant very reassuring and some have asked to be referred to another oncologist. I have absolutely no doubt our oncologists are all highly qualified and proficient but sometimes it's a personality/communications problem. Perhaps you could ask to see someone else if you feel you're not getting through to this particular doctor.
I don't have much faith in my consultant at my local hospital, as in the beginning before I was diagnosed with borderline serous disease, he told me my tumours where dermoid cysts. It was my ca125 which was 3586 that made him refer me to oncology at st Thomas's. And luckily for me he did.
Of course know the gynaecology oncologist has discharged me from oncology I'm back having check ups with my gynaecology consultant at my local hospital. I'm having a ct and MRI on Monday and am being referred back to oncology on Wednesday. I know it isn't long to wait, but as you ladies may well know a couple of days feels like a year. I just feel that September all tumours where removed and the oncologist said it was a slow growing cancer, whatever is there now (4months later) is 4cm it doesn't seem slow growing to me, and since having surgery so soon I shouldn't have nothing growing there at all.
Thanks again for listening to me rant! And would be great to hear from anyone who has anything similar so soon since having surgery x
I don't think it's another rant. I think there is a fault in the system whereby cancer patients who come up with symptoms and need urgent treatment are referred to their local hospital no matter where they are being treated. That means that they aren't then operated on by gynae oncological surgeons which I think is the better thing. This was brought up at my regional network meeting and it was pointed out that consultants do go out to local hospitals to give their own input to cases. What this means is that cysts and biopsies are looked at locally and local MRI/CTs are done. However, when a patient is re-referred to an oncologist, they are very often then submitted to further CTs and the biopsy material is recovered from the tissue bank for it to be looked at again by specialist pathology people. Well, that's what happened in my case and it takes weeks and weeks. I think it's a waste of time and money....this doubling up and upsetting for some patients. Love to you. Tina xx
I have a slightly similar story. Had pretty much the same op as you- tried to preserve fertility by keeping part of my left ovary. Unfortunately within my bodeeline tumors there was a small area of low grade cancer so I had 6 rounds of chemo. In between inital op and chemo I had eggs retrieved and during this process I developed a hemoraggic cyst (could be what he means by blood clot?). On completing chemo my final ct scan showed a 14(!!) cm fluid filled cyst. So 7 months after my initial surgery I had this and the remaining part of my ovary removed. This was essentially a very large cyst but there were a few bordeline cells in there too that they felt were missed from my first op. They didn't feel it was a recurrence.
No sure if that helps you but I think things can happen quite quickly but the important thing is to get it acted on early!
I know whatever it is it shouldn't be there, so preparing myself for more surgery. Just wish they would of given me a full hysterectomy in the beginning. I will keep you updated next week,
Hi Dollydimps, I was reading your post and I have had a very similar experience . Four months ago, I had large borderline tumours (stage 2b) on each ovary removed by surgery leaving me with a small part of one ovary for fertility purposes. I had my follow up scan 2 weeks ago which have shown a cyst has formed on part of ovary remaining. The oncologist has assured me it is nothing to worry about and will keep a close eye on it. CA125 was 34 before and now is 13. We are going through fertility tests and looks like IVF may be our only chance of having a baby. Your CA125 of 40 does not seem unusually high to me. Please feel free to PM me xx
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